I don’t know why

I’m not entirely sure why I stopped blogging, besides being sick. Once I started feeling better, I could have come back and resumed my journaling. Part of me knows that since last June we have been dealing with Le Moo’s decline. And I didn’t want to talk about it. I didn’t want to admit it, even though I admitted it in my reality. Maybe not writing it made it not as catastrophic as it really was? Or maybe I just needed the time to be with her because I knew the time was running down.

Le Moo is gone. It’s still devastates me to say or write that. We miss her so much I cannot even find words for it. My Sweet Pea, she was my heart dog…she was pretty attached to me and when she passed a piece of my heart tore away and went with her. It was like losing a limb, and I grieved her so hard that for the first time in my life I actually allowed myself to go to therapy. I had wanted to go to therapy but felt that I would be wasting money on myself. But after SP, I needed help and I went for it. Le Moo was my soul dog. I attached with her in a different way, and I felt that connection down in my soul. When we had her humanely euthanized here at home, my soul tore and left a gaping hole so deep inside that it will never be whole again. Le Moo was an old soul.

Le Moo was having many physical and mental issues. She had severe arthritis in her leg joints, her spine, and her hips. We tried to keep her comfortable with medication and laser therapy, but it benefits seemed to wane. She also started having doggie dementia, which is an actual thing (canine cognitive disfunction–CCD), which left her anxious and distressed a lot of the time. The symptoms got worse and worse, and her physical decline continued to the point where we had to help her get up from a laying position even when she had good traction. Our girl was strong and stubborn, and we could see she didn’t want to leave us because she knew how it would hurt us. But we knew it was her time, so we had a vet service who does only at-home euthanasia come in to the house. The vet came in and explained everything (even though we have been through this before) and he was very kind. Hub and I were ready with forbidden fruits for Le Moo–M&Ms and homemade chocolate chocolate chip cookies (my mother’s recipe/specialty)–so when the vet gave her the first sedative, we gave her the treat. She ate FOUR chocolate chocolate chip cookies with gusto, and snatched up every M&M hub had. When she finished the treats, her head began to slowly lower and I held her face in my hands. I told her she was amazing and that we loved her bigger than the sky and deeper than the ocean. And that it was time for her to move to the next world where she wouldn’t have a physical body to slow her down. I just kept talking to her as she fell asleep, and I had my body curled over hers as the vet gave her the last medicine. My beautiful, stubborn, amazing, loving, soulful girl went to the next world with cookie crumbs on her face.

We had her cremated–something I’ve never had done before–because I had seen these glass memorials where they take some of the ashes and create a work of art. We had that done and now this glass memorial, sprinkled with ashes–sits on top of a rotating platform, lit with led lights from below–is here with us. It’s a beautiful handblown piece of art, and it was one of the best decisions I have ever made.

We had devoted lots of time and energy to Le Moo over the last year. For the last three months of her life, Hub was basically sleeping a couple of hours in bed, then a couple of hours downstairs with Le Moo because her dementia made her restless and need to go outside to pace. We rarely left her alone, and when she became anxious or distressed, one of us went to her to reassure her. We were extremely lucky that she didn’t forget who we were but I have heard that does happen. Doggie dementia is a terrible, heart-breaking disease. There is no rationalizing with your dog, no way to explain anything…and for us there was no medication that made any difference. Nothing to stop or slow the disease, and nothing to alleviate the symptoms. We tried everything available but nothing worked. We couldn’t even help with her anxiety.

So, she’s gone. We thought Butthead would be panicking and looking for Le Moo. We let her see Le Moo after the procedure and before the vet took her body away. Only once that afternoon did Butthead wander in and out of all the rooms looking for Le Moo, but then she seemed resigned. She’s been extra clingy and depressed, but we really thought she would freak out. She used to freak out when Le Moo would leave the house for appointments or to get walkies without Butthead. But none of that happened. I’m grateful, but I see how the loss has changed all three of us.

Our lives will never be the same.

 

There comes a time

This past father’s day, when we were trying to “get together” but stay apart? I remember having very specific thoughts about my father and time marching on. I wrote something on my regular FB page about how I knew that time with my father is not a given. I lost my mother 5 years ago this March, and oddly my father has continued to age since then. He’s just 79, due to be 80 this fall. He’s had “poor health” for most of his late life years, including type 2 diabetes, high blood pressure, high cholesterol, kidney issues, diabetes related issues…he also smokes and eats terribly. If there was a bingo for Covid-19, he would win it. He rarely leaves the house these days, and even avoids most of his doctor’s appointments by doing tele-health. He goes to the cemetery to visit my mother’s grave several times a month, but there’s no one there to expose him to Covid. B1 lives with him, and either they have non-perishable food delivered or B1 stops when he’s out to get groceries. Sometimes Hub and I pick up food for them when we are doing our regular grocery runs.

Despite living basically next door, I don’t see my father every day. His preference is to keep to himself most days, and I understand. I certainly don’t want to push my presence on him, so I leave him be most days. Sometimes I’ll talk to him multiple times a week, sometimes I won’t talk to him at all. Sometimes I’ll see him every other day and sometimes not at all. We try to have him and B1 over every now and then for dinner, so at least I know they get some real food. We consider them part of our bubble, so we don’t socially distance. It also means Hub and I are extra careful and thoughtful about the decisions we make and the places we go because if we get exposed, so does he.

My brother–B3–and his girlfriend have announced their upcoming nuptials, but due to Covid-19 they are unable to book a venue until 2022. They decided on spring of 2022. It’s a nice time of year in our area, although we are prone to long bouts of rain. They might get a beautiful spring day, they might get torrential rain, they might get hot and humid. Even so, they decided on spring. I’m happy they found a venue and have picked a date. My little niece–their daughter–will be about 30 months when the wedding happens. It’ll be a good age, I think, for her to be the flower girl. Based on the little time I’ve spent with her (socially distant) and the videos B3 sends me, she’s going to be a real pistol. I hope she does something fantastic during the wedding…I will love seeing and I think my mother will be laughing from the clouds. LOL

Anyway, they have set their date, and the first thing I thought of was…my father might not be there. He’s not like, sick, but he’s also not healthy. And at 80 years old, heavy smoker, diabetes and kidney issues…we’re all surprised he’s still kicking–him included. I was no less than devastated when my mother died five years ago. I still grieve her and think of her every single day. She was my best friend (other than Hub) and I wasn’t entirely sure how to live without her in my life. My father and I are not as close, but he’s still a big part of my life. In my own way I take care of him, and in his own way he allows me to do so (on his terms, which I’ve come to accept). When he goes, I will lose another part of me. When my mother passed, I lost the part of me that was her daughter, her best friend, her cheerleader, her caregiver. When my father passes–someday–I will lose the part of me that is his daughter, his sometimes confidant, his encouragement, his place of understanding. I have learned that I don’t need to literally care for him the way I did for my mom in her final months, but I am the one he comes to when he needs to talk, when he feels lonely, when he is nervous or anxious, when he wants human company. When he’s gone, that part of me will go with him.

I’m not ready.

If you looked back at my relationship with my father, it was not always a good one. Being the only girl, I now understand he had no idea how to deal with me. The way he interacted with me was not beneficial to me, as he basically joked things away, made fun of me, or he pushed me away. I hated it, I always felt belittled and less than… And as I grew up and learned to react, I fought with him a lot. I got angry when he joked or made fun of me, I got angry when he yelled at me, I got angry when he spoke to me. I’m sure it’s not an unusual father-daughter relationship, but it was how it was for us. When I got older, he taught me things that he had taught my brothers when they were younger. I learned how to build things and fix things, I learned to change my own tires and my own oil in my car. I learned to be less girl and more person. When I moved out, our relationship changed even more and he tried to be a like a coach. He helped me learn to do things on my own, to believe I could do things and survive without someone holding my hand. He gave me independence and…trust. He gave me the understanding that he knew I would be okay on my own. I’m not sure how he saw things all those years, but this is how I see them from this part of my life.

As an adult, our relationship has been up and down, good and bad, close and far. Honestly, after my mother’s death, it has been all those things at once. When he passes, those things will all be gone…poof, like a candle being blown out. The wisp of smoke slipping away into the air, dissipating with every second that passes. I will be devastated even though it will be and will feel different than losing my mother.

Another part of me gone.

 

Reflections of love and anger

I have deep love and respect for my mother and my grandmother. These two women were very influential to me all my life. I am positive that I am who I am because of them.

Let me say that again… I am who I am because of them.

I have loved these women from the day I was born. There were times when I rebelled against them, and there were times I wanted to be just like them. And there were times I thought I wanted to be the exact opposite of them. I am the fourth and last of my mother’s children; she was thirty-two when she had me, so she is of an older generation than most of my friends. Both of these women were extremely pragmatic, saving their emotions for their private time. Both women worked hard for the things they had, working in and out of the home, raised families of 3 or 4 children on not enough money, and found ways to survive without us feeling like we were missing out on things. When my parents were the most poor in my lifetime, I don’t ever remember going hungry. I don’t remember wanting for much–except maybe going out to eat–and I rarely remember my mother saying “no” to things we asked for. This was the only childhood I knew, so if we were missing out on things, I didn’t know it.

I had a difficult childhood because I was fat from toddler-hood. From my perspective, my mother and my grandmother were just women, not overweight women. I know now as an adult that both of them struggled with their weight their whole lives, just as I have. I know now as an adult that the baggage I have carried about my body and my weight come directly from the baggage they carried about their bodies and their weight. I also know that I was terribly hurt and angry at how they treated me when it came to my weight. I was always on a diet, I was always being told to eat less, exercise more, lose more weight…

And I know my grandmother often said to me, “You have such a pretty face…if only you were thinner.” If only I were thinner, then what? And thinner than what? No matter what weight I lost, it was never enough for my grandmother. She said terrible things to me, required me to starve myself and count calories and deprive myself…she required me to do things that shouldn’t have been a priority to me as a child. And she treated me differently than my brothers. Their weight was because they were boys; my weight was because I was wrong. That I ate the wrong things and in the wrong quantities. She judged me every day of my life, until the day she could no longer judge anything due to strokes and dementia. This was a woman who was so important to me and I never felt accepted by her as I was, nor loved as I was. Not even when I attempted to share my thoughts and feelings as an adult…she couldn’t understand why I didn’t want to be thinner. This was her ultimate goal…be thinner! Did she accept me and love me? As an adult I can say yes. As I child, I would never have answered that in the affirmative.

My mother borrowed money from my grandmother to send me to fat camp when I was a pre-teen. She and my father asked for money because they didn’t have enough to send me, and my grandmother agreed because she wanted me to be thin. I learned that it was so important to my mother that I be thin that she begged, borrowed, and nearly stole to get me that way. I learned that my mother’s priority for me was to lose weight. It didn’t matter what other attributes or characteristics I had, it was my weight that she was focused on. I knew she loved me, but I also felt she would love me more if I were thinner. All through my childhood. As I got to adulthood, I was able to speak my mind to her about my weight and she was able to hear me. I was always close to her, but after that I felt accepted and supported and recognized. And I felt she was proud of me for being who and what I wanted to be. As an adult, my mother and I were more than mother and daughter, we were friends. She even approved of me seeking therapy when I felt I needed it, although it was something she had never believed in before then.

These two women molded me with their love and their disapproval. They gave me baggage that I didn’t want or need, and I’ve carried that heavy load for most of my life. When I started therapy, I was there for grief and depression and anxiety…and as I moved through my experience in therapy, I began to understand what their love and their disapproval did to me. My mother died five years ago, my grandmother ten years before that. As I learned more and more how they had shaped me, I found more and more anger for them. Who might I have become if they had supported me instead of belittled me? What might I have accomplished if they had loved me exactly as I was instead of trying to make me who they had wanted to be?

Therapy and delving into my life brought me so much anger and disappointment and resentment for my mother and my grandmother. My mother was still alive during some of this time, but I couldn’t find a way to tell her how I felt. I tried, and sometimes I felt so close, but the words never came. The last two years of her life were a fight against cancer, and by that time all I wanted to do was not regret how I spent time with her. When her mother was sick, my mother took care of her and spent as much time as she could with my grandmother. My mom told me point-blank that she didn’t want to regret anything when it came to her mother. When my mother got sick, I said the exact same thing to her and to my husband about her. I put aside my anger and my resentment and I loved her. I loved her through everything that happened during those two years because I vowed I would not regret a moment. It was worth it.

After her death, I delved further with my therapist about her, as well as my feelings about her. As I became aware overall–through my therapy–that how people treat me was not because of me, but rather because of them and their experiences, I became more confused and yet more understanding. Both my mother and my grandmother were shaped by their own experiences with weight and their bodies. They treated me the way they did because of how they felt, not because of who I was or how I was. Their baggage weighed them down, and they treated me the way they did because of it. It was never really about me…

This discovery about reflection has changed me profoundly. Understanding that what my husband says and does reflects how he feels versus it being a response to me or something I’ve done is a game-changer. It’s also a game-changer in my feelings about my mother and my grandmother.

I have found grace and understanding for them. I have forgiven them for how they shaped my life because I now understand it wasn’t about me. I’ve given up the anger and disappointment and resentment I had for and in them because I see all of it more more clearly now. Keeping the anger, disappointment, and resentment does nothing for me except weigh me down. Giving all of it up has freed me and I’ve found relief from all that pain I was holding within me.

I have deep love and respect for my mother and my grandmother. These two women were very influential to me all my life. I am positive that I am who I am because of them.

 

Good enough

Growing up, I was the “good” child. I was a goody-two-shoes, both at home and in school. My siblings made fun of me for following all the household rules as if I were in the military. No questions asked, no back-talk given, I did what I was told. In school, other students called me “teacher’s pet” and said I was a smarty-pants. I listened to my teachers, I did my homework and turned it in on time, I followed the school’s rules. All through elementary school I was like this, both at home and in school. I never wanted to step out of line for fear of getting attention for the wrong reasons. Teachers favored me, telling me how smart I was and how good a student I was. My parents praised me for getting good grades, good reports from the teachers, and for doing what I was told. But truthfully, I was left mostly to do my own thing because I could be trusted to do the right thing.

At the age of 12–in middle school–I started a small and understated rebellion. I was bored in class and angry that the more rambunctious kids got attention. Teachers barely paid attention to me because I was one of the “good” students. There were many times that I thought my teachers didn’t bother to look at anything I turned in because they didn’t have to worry about me as a student. They assumed that I was doing things correctly and that I would deserve an “A” on my work…and that’s generally what I got. Between the boredom and the lack of attention, I was so irritated that I started skipping classes. Sometimes I would just wander around the building and other times I would go hang out in the guidance counselor’s office or the secretary’s office. I never left the building so I wasn’t technically truant, but I was out of the actual classrooms. I think there was a lot of time that my parents didn’t even realize that I was “skipping” class because I stayed on school grounds.

Then when the guidance counselor told me that I could no longer hang out in her office, I had to come up with some other idea. And I realized if I said I was sick, I would not only be dismissed from class but I would be relieved of other obligations. Being sick gave me a kind of freedom from being the good kid…from responsibilities and expectations that came along with being the “good student”. And if I said I was sick, I was able to go home in the middle of the school day. Both my parents worked full time at that point, so I either walked home, or if I had money I took a cab. At home I was free to do what I wanted until someone else came home…either one of my siblings or my parents. And since I was a “good kid” my parents didn’t question if I was actually sick…they assumed if I said I was sick then I was telling the truth.

Eventually my parents saw my quiet rebellion and things came to a halt. I was told in no uncertain terms that I was to return to my formerly good student/child life…period. I was too afraid to say no, so as I moved into high school, I left my small rebellion behind. Instead of being bored and pouting about it, I turned everything around and flew through high school. I took as few classes in the day as I could and still graduate. When I wasn’t in school I was working part time retail. I saw the brass ring hanging out there and I wanted it. My last year of high school I was only in school for three classes, then I left in time to go to my job where I was earning money for my car and for gas and insurance.

As expected by my parents, I went to college. I took classes that looked easy and I breezed through most of them. I was still working while I was in college, and I think my parents felt relief that their “good kid” was on track. Unfortunately, in college I ran into the same kind of inattention/disinterest from professors. After the first few assignments of each class–when the teachers realized that I was smart and knew what I was doing–they stopped reading my work. I know this because I started turning in shitty work and still got A’s. It was disappointing and frustrating. I was left aside for students who needed more assistance. To this day I feel I missed out on a lot of education, but at the time I didn’t do anything about it. If I’d been a better person, maybe I would have stood up and asked for more attention, but I hated being the center of attention or “rocking the boat”. So I skated through and graduated without much issue.

During my junior and senior years of college, I started working full time and going to class part time. I found a career path that had nothing to do with my schooling but had everything to do with things that interested me. Technology. I excelled at my job(s) and took pride in my work. As I moved up through the ranks of my technology job(s), I began to feel the imposter syndrome. I had grown up feeling as if I weren’t good enough, and that ingrained feeling led me right into feeling as if I were an imposter in my job…and essentially in my life. I felt I didn’t deserve any of the things that I had.

I met a young man while I was in college. Our early relationship was online, but then we began dating (irl). I didn’t date in high school or even mostly in college. I felt like I didn’t deserve to have a boyfriend. And when I got a boyfriend, I never felt good enough for him. It wasn’t that he was better than me in some way, it was my old baggage of never feeling good enough for anyone…or anything.

Being a good employee, a good wife, a good daughter, a good sister…I didn’t feel good enough. So my body resorted to what had worked for me as a pre-teen. It made me sick to release me from all those feelings of not good enough. If I was sick, I didn’t feel like I had the obligation or responsibility of trying to be good enough. Or doing things that were good enough. I had several vague illnesses that had no real source. I had labels put on me by different doctors that amounted to different “syndromes”, which really is just a collection of symptoms that couldn’t be attributed to anything specific. I had pain symptoms, fatigue, dizziness, balance issues, gastric issues. I went through a lot of doctors and a lot of tests, but I was never really given any concrete answers. Doctors attempted to help me resolve symptoms, but they were unable to give me the reason why I was sick. And I was really sick…a lot of times I couldn’t get out of bed. I was too fatigued and painful, I took a leave of absence from my job to deal with my ill health. After almost nine months, I was released from my job because I could not return in a timely fashion. I was sick in this way for close to 8 years, although at one point I was writing (and publishing) books. During this specific time I felt very involved in a community and my symptoms waned. They were still with me, but it was manageable. But for the most part my symptoms ranged in severity and specifics over the years. I was unable to hold a job during those 8 years. Most of my family and my husband understood my limitations, and rarely did they ask too much of me. If they did and I could not meet their expectations, they always made sure to tell me that it was no big deal. I wasn’t ever looking for attention when I was sick…I hated the ongoing doctor’s appointments and tests, so it wasn’t that I was seeking attention. I now think I was seeking a break from my own expectations for myself…if I wasn’t well then I didn’t have to strive for the perfection I expected of myself.

A few years later, I actually started feeling better and was able to do more in my life. My home circumstances changed, my parents were living very close by and I was spending more time with them. My husband continued to pursue his technology career and we finally felt more financially stable. Although I still felt badly that I was not bringing in any income, my husband was fine with the situation. My body began to heal, my mind felt comfortable, my spirit was buoyed. I was living in a way that was working for my body. I didn’t push myself too much, and yet when I needed my strength it was there. I felt at peace with my health even though it wasn’t perfect.

And then my mother was diagnosed with cancer. A relatively rare and aggressive cancer. My life changed…and so did my purpose. I became my mother’s cheerleader, her caretaker, her confidant, her friend. I was her secretary during doctor’s appointments–I took copious notes to review later–and I helped keep her calendar. I was with her all the time, keeping her occupied, keeping her on schedule, keeping her fed (this from the child/person who never cooked or baked because she knew in her heart her food would never be as good as her mother’s food)… I had flashes of doubt and impersonator syndrome, but it usually ended up being drowned out by the things I needed to do for my mother. My health stabilized and I found energy and strength that I didn’t know I possessed anymore. Taking care of my mom was not an obligation or responsibility…it was love. That was why my body allowed me to do that. I WAS good enough to love her that way.

After my mother’s two year battle and her passing, I grieved terribly. Other than my husband, my mother was my best friend. During the two years she lived with this terrible cancer, I spent almost every free minute with her. Losing her left me devastated…and lost. For two years I had a job, a purpose, and despite having no experience with caring for a sick person or dealing with cancer, I had been good at it. No one asked me to do the things I did or act the way I did, I just did it. I didn’t worry if what I was doing was good enough (until the end) because I was too involved in participating in my mother’s life and fight. But afterward I floundered. I looked for charities and volunteer opportunities to find a new purpose. But about a year and a half after my mother died, my body rebelled again. Thinking about it now I would not call it a rebellion, I would call it a rescue.

I had a very severe case of classic and vestibular migraine disease. There were months in the beginning where I could not leave my bed. Months where I could not walk, months when I had to go to doctor’s appointments in a wheelchair with dark glasses on even indoors. It took me close to two years to even begin to find recovery with medications, diet, supplements, vestibular therapy, and exercise. And then 2020 hit, and any of the plans I had to participate more fully in life fell away. I was given the opportunity to really focus on my mental health, on my healing, and on my transformation. My physical recovery continued–sometimes slowly and sometimes in leaps and bounds–and I focused my mental recovery on becoming who I wanted to be. And along the way, I have made some pretty surprising discoveries.

This discovery about my physical body and the illnesses that plague it, came unintended. I was going to work on a blog about a different discovery I’d had in therapy over 2020, and a whole different set of words came out. About my health, and how it has affected my life, mentally and emotionally.

My body tried to save me from the torment of feeling not good enough. Of the daily mental and emotional torture of feeling not good enough. When my career became “too much” and I began suffering with imposter syndrome and endless feelings of “not good enough”, my body introduced an illness that took over my life and my focus. I had years of “a break” from those “not good enough” feelings while I was sick because I didn’t have to feel not good enough when I was sick. Because all I had to do was exist. Obligations and responsibilities fell away during both lengthy illnesses…I allowed myself to put away concerns of “am I good enough” because surviving was good enough.

This realization was actually quite difficult for me. My first instinct was to be embarrassed that I “made myself sick” to avoid obligations and responsibilities (even if the obligations, responsibilities, and expectations were from myself). How do I tell my husband that I (or my body) made me sick so I didn’t have to deal with guilt or shame or criticism or judgement over whether or not I was good enough for…anything? Fortunately, my work in therapy came into play and I reminded myself that I did not consciously make the choice to be sick, that it was an autonomic response. And then I reminded myself that without that person–the one who was sick on and off for many years–I would not be the person I am today.

And thanks to my therapy, I am choosing to have compassion for the young girl and the young woman whose body did its best to shield and relieve her of the ongoing mental and emotional pain that would have beat her down in an ongoing fashion for all the years she was sick. I am grateful for the sacrifice that my body made for my psychological health, even if it felt like a struggle to survive during those years.

*I would like to note here that my chronic illnesses have been and are 100% real and sometimes physically disabling. I have not had a miraculous recovery since coming to understand that there might be at least partly psychological reasons for why I was and am sick. I have no idea what recovery might look and feel like, and I am not suggesting that anyone else’s chronic illnesses are not physiological.

 

In defense of my body

Six years ago I wrote a blog post about my body. At that time I thought I was ready to work on the relationship I had with my body. I had my list of cons and pros–all of which still stand–but I was unable to hold onto my gratitude for the physical that carries me through my life.

I have changed physically, emotionally, and mentally since that time, and yet my anger and disappointment in my body still exists as it did that day. Yesterday during my session with T, I talked about my relationship with my body, and how I want to come to an understanding of sorts. Really, I would like to find and hold onto the appreciation I should have for this body that holds my life spirit. It’s the only body I have…I choose to pursue a better relationship with it.

T asked me to look at my body as if it were a physical being on its own, a friend rather than a part of me. Would I be as abusive to a friend as I am to my body? Would I belittle and berate it? Would I be angry at how it stands, how it sits, how it moves? Would I call it names, tell it that it’s too ugly, too flabby, too big, too everything? I would never say or do these things to a friend, how is it that I allow myself to do and say these things to myself? This is not a new concept to me, that I treat myself way worse than I could ever allow myself to treat someone else. Why isn’t it getting through to me?

Every day I carry my craft bag up and down our stairs from bedroom to family room. In it are the things I use all the time, like my crochet supplies, my iPad, some books, my migraine tracking calendar and etc. It has to weigh less than five pounds. And yet there are evenings when I go upstairs that I feel so tired and so heavy, or my knees are tired and painful, that I struggle with the steps. Our steps are U shaped, so halfway up there is a landing that I stop on. I’m not under duress, I’m not sick, I really can climb the steps without issue, but during this year of 2020 I feel beyond. So the other night, I’m stopping on the landing–because maybe I stood a lot chopping and cooking for dinner–and I rest. And a thought hits me…for most of the years I’ve lived in this house and many more in our last house, my body carried fifteen times the weight of my craft bag on top of my current weight. Seventy five more pounds than I am carrying at the moment I had this thought.

My body did that on an almost daily basis. And yes, some days it was harder than others, and some days I took our residential elevator to the bedroom level. Some days my knees hurt more or less, my back hurt more or less, my feet hurt more or less, my myofascial pain flared or didn’t, my migraine pounded or spun, my head ached or didn’t, my stomach rebelled or didn’t…and still my body carried me. Still my overweight, overstretched, overused, over-abused, over-belitted, disrespected body carried me where I needed or wanted to go. My mind and spirit carried so much anger and disappointment with my body, and unrelentingly my body carried me. Yes, there were days when I wasn’t getting out of bed due to vertigo or pain or exhaustion…but my body still held me.

I have got to stop this hate, this disappointment, this abuse. Now. I choose to stop this hate and disappointment and abuse. My body clearly loves me or it wouldn’t do all these things for me…I am choosing to learn to love it in return. Every part, every roll and lump, every bit too big, too broad, too hairy, too short, too everything.

This body that carries me is my best friend. The kind of friend that will do anything and everything for you, oftentimes unasked. It’s time I do the same in return.

 

Big dog time bank

It’s been three years since I posted about borrowed big dog time. And here we are, still dipping our paws into the time bank. Le Moo is still with us, although her health is…not so great anymore. The good news is, she’s still pretty hale considering she’s now about 12 1/2 years old, 94 pounds, and tagged as a great pyrenees mix. All that means is she’s an old dog for a big dog.

My old lady is still as beautiful to me as the day we adopted her. I had some issues with her initially, but these days I’m so grateful for each day with her. She’s got arthritis in her back and hips, possibly in her neck, she’s knuckling over and occasionally dragging a foot or two as she walks. Today she tripped in the yard and fell on her face…and it’s not the first time (she pops right back up and we make sure she’s ok). She loves to be outside walking with us, but I’m a terrible worrywort about her. It’s so bad that Hub has to walk her while I walk Butthead, and that way I’m concentrating on BH and I don’t spaz over Le Moo’s every little step or hesitation.

Le Moo has also lost multiple teeth (during dental surgery, not just randomly), including one of her front teeth. It’s freaking adorable, I can’t even explain. Her nose is getting kinda crusty (we use Natural Dog Company’s SNOUT SOOTHER!) and the pads on her feet are growing extra keratin (we use Natural Dog Company’s PAW SOOTHER). She’s black and white, so most people won’t notice the graying that’s showing on her face. The dignity of the old dog, I see it in her white face and cloudy eyes. She’s losing some of her sight–she’s just as likely to bite your finger as the treat you are holding out for her–and her hearing is going, too. Just today Hub gave me the sad update that more and more Le Moo is startled when you touch her because she didn’t hear you approach. But she gets the treats, and she hears the cheese wrappers open from the other end of the house when it’s time for pills.

We’ve bought booties for her back feet to help her when we’re out walking, so it keeps her toes from knuckling over. She has a special harness because she has a huge fatty lump on her chest and a cyst on her neck. Lumps and bumps have sprung up all over her body as she’s moved into her (very) senior years. There’s a lump on her lower eyelid that keeps reappearing even when we have it removed surgically. Her back legs have lost a lot of muscle tone because of the arthritis, so she’s slipping more and more. Her back legs will just slide out from under her and she can’t pull them back under her. There are times when she’s scrambling to get up and she just can’t get control of those back legs. Hub and I have had to help a few times, but most of the time she figures it out on her own.

It’s not only the physical, though. My independent lady, she spends more time with us than ever before. I can’t decide if I’m honored or distressed to see her come looking for me every day, multiple times a day. If I’m in the dining room working on my puzzles, I can hear her tippy tap across the tile to look for me in the family room in the recliner. I call to her to say I’m not there, and she follows my voice to find me. There are time when it’s the reverse, or if I’m in the kitchen and I see her looking for me in the dining room. I am guessing since her sight is going, she’s using habit to find me because I am normally in only one of two or three rooms on the first floor of the house. Sometime she will just keep looking if she can’t find me in one place or another.

And there are times when my lady bug comes to me, panting and wide-eyed. This is relatively new, in the last year or so, that she’s having anxiety. Is it from her loss of sight or hearing? Is it age that is degenerating her mental health? We don’t know, but I take these times to sit on the floor and pet or brush her. I try not to ignore her or turn her away, because one day she won’t be there looking for me. Looking for comfort and reassurance. One day it will be me looking for her, my heart breaking again and again because she’s gone. So when she looks for me, I go to her. We’re using some anxiety medication to try to help her, plus some over the counter calming treats. They help but don’t get rid of it 100%. She’s also on a myriad of pills and over the counters supplements for her pain.

Along with the new anxiety and clinginess, we are seeing some potential signs of doggie dementia (canine cognitive disorder–CCD), which I didn’t know was a thing. The anxiety and clinginess could be attributed to CCD, or they could be related to her potential loss of sight and/or hearing. But there are times when she looks confused if we ask her to do something she has done regularly for years. For example, we give the dogs a food distributing toy for their lunch–which Le Moo has been doing for 7 years. Some days she looks at it like she doesn’t know how to use it, and some days she does just fine. She’s also taken to lying down facing a wall rather than facing the room. And when I say facing a wall, I mean she’s really close to the wall and basically can’t see anything but that wall. Then there’s the bedtime pacing and anxiety, which could also be another sign of CCD. It’s equally as difficult to diagnose canine dementia as it is to diagnose human dementia. There’s no blood test or physical test that will give you a definite answer, you can only look for the symptoms and see if/how they progress. We’re giving Le Moo extra “brain” supplements along with her anti-anxiety stuff, and for a while we saw a difference. Now, I think she’s progressed beyond what the supplements can do. It’s not as bad as it could be–I’ve heard stories–but it’s definitely noticeable.

Every day she looks for her pills (in cheese), and then she finds us when it’s time to go for her walk. We go slowly these days, and keep her in the grass as much as possible because of the falls she’s taken. When we come back from the walk she gets a special treat, and she gets so excited that she sometimes hops around, then slides on the tile (even though we have rug runners everywhere). There’s still excitement in her eyes and her face when she knows she’s getting something delicious. And she knows how to beg like a champ…

I also like whatever it is you are eating…

With her cute little fuzzy head. We try not to feed her anything from the table, but there’s a specific rug she has to go to in order to get leftover veggies after we are finished eating.

Le Moo and Butthead under the kitchen table. Lookit that gap in her front toofs!

She’s slowing down, and no matter what I say to her, she continues to age. At 12 1/2, we know her time with us is limited. We’re doing everything we can to give her great days every day. We spoil her and spend our time with her. One day, when she’s decided she’s had enough of these earthly bonds, we will be with her as she crosses over. And she will be with us in our hearts forever.

(P.S. please don’t tell Hub how old Le Moo is. He can’t ever remember her correct age, and I’m pretty sure it’s on purpose.)

 

Five years on…

In 2015, I was seeing a gynecology nurse practitioner near my home. I was not good with keeping up with my gynecological health, at least for about 15 years or so? Maybe less, because I had some issues in my twenties and I was seeing a gynecologist that I loved. Unfortunately, when I got sick in 2001, my general health became front and center for me. I made the rounds of almost every doctor specialty there was, except for the gynecologist, seeking understanding and treatment for my new chronic illnesses. When I found out what was wrong and how I could treat or live with it

I had my final appointment with my gyn oncologist last month. It was a month late due to COVID, but I ended up going to the office to get a final physical exam. And to say goodbye to my gyn onc doctor. I don’t know how to explain what this doctor did for me, and not just in a surgical way of removing my cancer.

I actually met this particular doctor probably five years (or so) before my actual cancer. I’d been seeing a gynecologist near my home, someone new to me but in the practice I’d been using for a couple of years. I met with this new gynecologist, explained the issues I’d been having (odd bleeding patterns, major cramping and pain, etc). The doctor told me I likely had big fibroids that were causing my issues, and if I wasn’t “planning to use my uterus”, I might as well get rid of it. I was in my thirties and the truth was, I was not planning to use my uterus. But to have a doctor who had barely examined me, didn’t run any bloodwork or ask for any images (I had an ultrasound on file from one of the other doctors in the practice)…she was suggesting a traditional hysterectomy. I was shocked and afraid, and I remember her saying to me, “I’m an excellent surgeon, I got this. I got this, no problem, you’ll do fine.”

I’d never had surgery before, I had only been in the hospital once overnight for a combination of mono and strep throat. I was not taking any medications at this point (I was in a very medication-phobic existence), I was terrified of surgery, and I didn’t understand why she was so willing to rip organs from my body. At a first meeting. Yikes. So after I went home to think about it–and cry hysterically–I decided to get a second opinion. I went to the internet and researched the best gynecologists in my state, and found someone who had been rated in the top ten for most of the years those lists existed. Not only was he rated as excellent, he was also skilled in robotic hysterectomies, AND he was actually one of the few gynecologists who was also teaching the robotic surgeries, and was on the hospital panel for robotic research. And he was an hour away. And taking new patients.

I made the appointment to go see him, and when Hub and I went to his office, we were extremely impressed. Not that the offices were fancy–they were very homey–but that this very tall, big man, was gentle. He had a kind face, kind words, and compassion ooozed from every part of him. He did an exam, reviewed my previous ultrasound, and then he sat down to talk to both of us. As he spoke, he gave us options, telling us it was very appropriate to “wait and see” at my age and with my imagery. If we wanted to consider surgery, he recommended robotic, but he wasn’t convinced it was necessary immediately. I felt immense relief, and I said to him, “If it changes in the next year or two, can I come back to you? Will you see me again?” He smiled and it was like a reassuring hug from a relative. He told me he would be there, and they would keep my charts and I would be treated like his regular patients. No long waiting period, no new patient appointment again. We left his office feeling like we had a plan, and I was planning to get a regular gynecologist near home for annual exams.

I did get regular annual exams and the gyn knew about my fibroids. She kept saying if I could manage the pain and unusual bleeding, they would just keep track of the size of the fibroids. But a few years later, there was a new issue, and the gyn wanted to get a biopsy of my uterine lining. This was an out-patient procedure, but I was still terrified. I took no medication, they did the biopsy, and I went home to wait. I wasn’t comfortable, but the pain was manageable. The biopsy came back as benign, but my current gyn recommended a hysterectomy, saving my ovaries so I didn’t go into an abrupt menopausal state.

I knew I wanted to go back to the other gynecologist for a second opinion. I made an appointment and went with my test results. He agreed, saying he could do a robotic surgery where I would be in and out of the hospital the same day, and that recovery would be MUCH easier than a standard abdominal hysterectomy. Knowing his expertise and experience, I trusted him and went in for surgery 10 days later (uterus and cervix were being removed, because the cervix can actually regrow fibroid). He stopped in to see me before surgery, and then he came back later in the day before I was released. Both time he was kind but confident, just as he had been in our initial meeting years prior. It wasn’t an arrogant kind of confident, it was a confidence borne of training, experience, and hands-on knowledge.

I had a few follow-up appointments set, so that my incisions (internal and external) could be watched. After my first appointment, on a Sunday at dinnertime, our phone rang. It was him–not his office or his nurse–calling to break the news that the routine biopsy of my uterine tissues had come back as cancerous. It was very early, stage 1a, and he was confident that in removing my uterus and fibroids that the surgery had successfully removed the cancer. However, the type of cancer was estrogen fed and he wanted to remove my ovaries and tubes to get rid of the hormones and anything else that could grow tissue. The compassion was clear as I spoke to him, and his confidence in my ability to undergo and recover after another surgery made me feel relieved. The worst had happened, I had cancer, but he had taken care of it, and would finish the work in the second surgery, including a pelvic wash to test for any lingering cancer cells.

I managed the second surgery six weeks after the first. I was on the schedule for follow-up appointments, and I went with questions about how I was going to be followed for potential recurrences. The doctor spent as much time as I needed answering questions. He wrote notes for me, he drw pictures, he discussed percentages of recurrences, of metastases. He talked about “connected” cancer organs (breast and colon), he said he’d be seeing me every six months for five years, with CT scans every year.

At every appointment, he was kind and patient, compassionate, knowledgeable, current on new technologies and studies and medications. When my mother passed, he spent time with me, asking about her cancer and her treatment, giving his reassurance that it sounded like everything that could have been done was done. It was silly, but I looked forward to seeing him because I felt like I was getting a periodic dose of OK. You’re okay, you’re going to be okay, things will be okay. You will recover, you will do well, you will have a life to live. The drive to see him sucked, especially once my migraines recurred, but the appointments were worth it.

This past August was my very last appointment. I made him a gift (I crocheted him a uterus and fallopian tubes) and he said it was perfect. I was really pissed because COVID robbed me of being able to hug this person that had been such a big part of my adult life. He’d been my safety net, my cheerleader, my support system. I know it sounds weird, but now that it was over, I was sad and going to miss him.

I could continue to see him as a regular gyn patient, but the truth is there are many competent doctors I could see closer to home. And by letting him go from my life, it opens him up to other people who need him the way I needed him. Although I hope to never see him again, I do regret not seeing him again. Maybe I’ll change my mind in the spring, when I need to have an annual exam, so who knows.

I’ve been “released” from my cancer watch after five years of living in six month increments. I told my therapist I’m not entirely sure how to live without this safety net. There have been so may changes in the last four years, including losing my mother and my neurology nurse practitioner (another blog), and now my gyn oncologist. I told my therapist if she moves away, I’m not sure I’d recover from all the abandonment issues.

This turned out way longer than I expected. Thanks for taking the trip with me.

 

Bittersweet family feels

As I may have mentioned in the past, I have three older brothers. Today’s rant is courtesy of brother #2 (B2), by way of his wife (SIL).

As a child, I was not close to B2. He was not really a nice brother, and he had no interest in being involved with me. The five year difference in our ages might have been the reason, but as a child I felt it was because I was a fat kid and I embarrassed him. I will note, he was also overweight, but he was considered “husky” because he was a boy. When he was in high school, he had a friend who lived down the street and he frequently called her his “sister” but never really acknowledged me. When he started community college, he let me hang out in his basement bedroom when he was out, which I thought was a “cool” space, but otherwise nothing else changed.

He moved out of our parents’ house shortly thereafter, then married a woman he’d been dating who was, um, much older than him. They had a baby about two years later, and for some reason there was an argument between him and his wife and our parents. They stopped speaking to our entire family for about eight years? During that time they had another child, whom we did not meet until many years later.

When B2 decided he was unhappy in his marriage, he contacted me and we began communicating. I helped him get back in with our family, and during his year separation (required in our state) he lived in my house. His children came to my house to stay with him every other weekend. Shortly after his divorce was final, he moved in with his new girlfriend about half an hour away from where I was living. They married shortly after I married Hub, in a small ceremony. I moved to a new location and a few years later B2, SIL and their kids moved into a house nearby. But, they were only there for a short time because SIL’s job was moved to another state, 12 hours away. They picked up their entire family and moved (her parents also live here in our state). And despite lots of promises, they did not come back very often for holidays or gatherings. They were gone about 10 years, and when I heard about their life, it was always about the fantastic neighbors they had who had become “family” to them and their children. When FaceBook came around, I had a little more communication with B2, but not much.

My mother got sick and spent 2 years fighting her cancer. B2 barely came to see her and I began resenting him for that. I was my mother’s best friend, cheerleader, sidekick, caregiver, nurse, secretary, confidante, and I have no regrets. I spent every moment I could with her as she tried to live her life. He followed along with her adventures by phone, when he could make the time. He came to stay with my parents for a week or so, just before my mother died. Then he went back home again, promising that he and SIL would be moving back into our area now that their kids were all out of high school and could live on their own.

He did come back and stay with my father while he looked for a place to live. He wanted one kind of home and property, SIL wanted something completely different. As they tried to come to a decision, she complained often and loudly that she didn’t want to move. But in the end, they did move back to our state, about 90 minutes away, in the type of house and property she wanted. He gave in so that she would move here. I get it, I understand. I also understand that she picked a location far away from our family and hers. Her relationship with her family is not a very good one. She converted B2 into that style of living, in my opinion. Neighbors and friends are family, actual family is a burden.

I never really got along with SIL, either before they married or after. But truthfully, we never spent enough time together to get to know each other. When she decided to move their family 12 hours away, that was kind of the end of any potential relationship. She’s not in my age bracket, we have nothing in common (except B2), and I had no reason to attempt to make her a friend when they were living so far away. When they moved back to the area, I had some conversations with her and spent a bit of time with her (not friends time, but sibling time trying to help out a family member), but we weren’t friends. We communicated seldomly, and mostly through text, occasionally through email. I still was not fond of her–most of her conversations were complaints and she always knew better than everyone else–but since she lived 90 minutes away, I didn’t have to spend a lot of time with her. On the other hand, B2 and I were creating a nice routine of speaking once a week to keep up with each other’s lives, and to stay in contact about our elderly father.

Unfortunately, shortly after COVID became a regular part of our daily lives, SIL’s mother passed away, unexpectedly and in an unfortunate way. B2 said not to worry about attending the church memorial (my father, Hub, and I are all compromised individuals) being held in our area. He also said SIL’s father didn’t want anyone other than his kids/their spouses to attend the out of state burial. We took them at their word and did not attend either. In between the memorial and the burial, I sent SIL a text saying I was thinking about her, sending love, and that I didn’t want to intrude during such a difficult time. Having lost my own mother, with whom I was close, I understood the devastation of the loss. Again, SIL is not my friend, we don’t chitchat or hang out as friends, but she’s family and I wanted to let her know that I was feeling for her. Every time I spoke to B2, I asked about SIL, asked about him, and sent my love to SIL through him.

Shortly thereafter, I started seeing very passive-aggressive posts and comments on FB about or to me. I was confused, and Hub told me I was imagining things. My therapist said the same thing, and that if I wanted to know what was going on, I needed to reach out. So I did reach out, to B2, because he’s my brother and he’s the one I talk to on the regular. Well, it HAD been on the regular before the funeral, but not after. I had called him once and texted him once, but he’d been short with the conversations. I figured they were dealing with things and I didn’t pursue it. They came (late) to an outdoor dinner we hosted at my father’s for B3’s birthday, and the minute they showed up, SIL started again with the passive-aggressive conversations. Loudly, and taking up all the attention and air in the space around her. I stayed away from her (we were social distancing outside as well) and did not engage her. I knew, at that point, the crap on FB had been about me.

That night, I wrote an email to my brother, saying that if there was an issue between her and me, they should have addressed me right away. I couldn’t read their minds, I didn’t know what was going on. But I was not interested in continuing this…spat in public. I told him to tell SIL that I was blocking her on FB, that I did not deserve to be disrespected like that, and that she shouldn’t bother to continue with the commentary because I wouldn’t be able to see it. I also told him I felt very strongly about this, that I would certainly NEVER ignore someone’s pain especially over a big loss like this, and that I couldn’t imagine he would think as much. I told him that he is my brother, is an important part of my life, and if we needed to handle this we should do so in person. I told him I was making myself vulnerable to him and to her by reaching out, and that I was hoping they would not respond hurtfully.

That was my last attempted contact. Since that birthday party, I did block her on FB, and I have not reached out again. He has not made any attempt to contact me, and I feel that I did my best to try to confront the situation. I’m sad because he and I had become close, and it seemed like anytime that happened SIL would tear us apart. So here I am again, living life without my brother, even though he’s much closer than 12 hours away.

I made it without him the first time he left our lives, I made it through without him the second time he departed, and I will make it without him now. I’m sad about it, but I was honest and open with my feelings, in a kind and unaccusing way. All I can do is be honest and speak my truth. What he decides to do at that point is his decision. I understand that he has to live with his wife and he has chosen to support her in this. But I won’t let someone abuse and disrespect me like she was doing. I stood up for myself, which is not something I do easily.

I want to add, my father and B1 did not contact SIL about her mother’s death. For some unknown reason, it was different for them vs me. She never gave them any shit, just me. Also, I went to my father’s house and set up a donation online to the organization for the disease her mother had. My father made it a donation from the three siblings and him, but I am the one who actually took care of the “paperwork”.

Well, rant over. There are days I still miss him, and then I remind myself that there are people who love me and want me in their lives. Those are the people I focus on, and those are the people I give my time and heart to.

 

Two years, many tears, lots of fears

I think it’s been almost two years since I posted a blog? I know I posted briefly about my migraine disease, but I’ll talk a little about it here, as well as update (in short) what has been happening.

I’m coming to you from a new little laptop that my husband helped me pick out. I had a bigger, heavier laptop that I used when I was still working on our publishing company. The laptop is still good, it works fantastic and has a terrific screen, but it weighs almost 10 pounds. I spend the majority of my time on my phone, my iPad, or the iPad Pro I inherited from my husband. I’ve become accustomed to using APPS for everything, so much so that when I needed to set up this new laptop I kept asking my husband “where’s the app for this/that?” Guys, I used to be a tech person as a career before my first illness in the early 2000s. I’m so far out of it, and so ingrained in the tablets, that I was lost with the new (windows 10) laptop. But I can’t type on the iPad or iPad pro. Not even with the little keyboards you can attach, because…little and flat. So I told hub I would forgo a phone upgrade (I hate all the new phones and my old phone works fine) if I could buy a mid-size, lighter weight laptop. He’s a sucker for me, so of course he said go for it.

So far I’m enjoying the laptop, but I haven’t used it too much as it’s just a few days old. I spent most of yesterday migrating files from my old laptop to the new one, so really I’ve only had it a day. This is my first time typing anything of any length, and not hunt-and-pecking. 🙂

On to the updates. You can read some background here and here. I’m FINALLY at a place where my medication, diet, and other bits have been helping me more consistently. I’m certainly nowhere near 100%, but I’m in a better position than I’ve been over the last three years. I’ve had to give up a lot–food and activities–even prior to COVID, and add a ton of medications and supplements (and diet and exercise and more therapy and attempts at meditation), and I’m still grieving the loss of who I was and how I was able to live.

My migraine attacks can be classic, with head pain and light/sound sensitivity, nausea, and the like. But lucky me, I also have what is called vestibular migraine, where the attacks come with vertigo, nystagmus, oscillopsia, imbalance, dizziness (different from vertigo!), and more. I can even have both sets of symptoms at the same time. Yay. I’m on two different prescription preventatives (that come with their own side effects, of course), several abortives to try to stop the break through attacks before they happen, and a benzo as a rescue, mostly for the vestibular migraine symptoms (like dizziness and imbalance, vertigo and nystagmus).

Part of my new life includes a diet change. As I was doing the Whole30, the recurrence of migraine disease happened, so I went from eating Whole30 to eating what is called Heal Your Headache diet. This diet was crafted specifically for migraneurs, helping you keep away from foods that trigger migraine attacks. Of course, as with any diet, every person is an individual. And of course, as it would happen, Whole30 is basically LOADED with common migraine trigger foods. Like nuts. And of course I was eating chocolate, and prior to W30 I was eating lots of cheese and beans. Basically, all those had to go. In the early stages of HYH diet, I ate basically the same thing every day that I knew was safe. If I ate something that triggered me, I usually had a vertigo attack, or nystagmus. Both of those symptoms SUUUUCK, so I quickly became fearful of trying different foods.

Three years later, I’m still trying to get my diet and fear of foods/attacks under control. I’m eating more variety, but still limited. I’ve been having longer periods of feeling well, then relapses again for what seemed like no reason. I’ve upped my preventative medications, added in a second (propranolol, which is a blood pressure medication that supposedly works well with the tricyclic antidepressant I’m already on), gotten the two new migraine-specific abortives, and I’m on a shit-ton of supplements. I have no idea if any of the supplements are working, but I’m kind of afraid to stop them. My previous phobia about taking any kind of medications (RX or OTC) has changed dramatically. I don’t love taking new meds, but I also don’t cry and worry and require Hub to sit with me when I take them. I guess that’s a positive? I also am more likely to take a medication to stop a forthcoming attack, because taking your meds early often makes the difference in the meds working well.

Unfortunately, it seems like some of the setbacks I’ve been having were due to eating foods that weren’t necessarily common migraine triggers, but COULD BE migraine triggers. One is gelatin (technically, fish gelatin–which I thought would be safe but was wrong about) that acts like MSG in your body (MSG is a huge migraine trigger, one of the most common). I was using vegetarian marshmallows as a snack, having one or two big ones a day, or a small handful of small ones. I wasn’t tracking this originally on my food tracker, so I couldn’t go back and look to see where and when I’d eaten them and if they corresponded with the setbacks. So when I had a big setback recently, I took the new abortives multiple days in a row and stopped eating the marshmallows, and I’ve been doing okay. Prior to this setback, I think the previous one was from brown sugar, which is made with molasses, which is fermented. Ferment foods CAN BE a migraine trigger…it was either that or oats, but fermented foods are more common. I stopped both the brown sugar and oats at the same time, but I’ll try oats again soon. Prior to that, I was eating some “safe” caramel candies in the evening as a treat. I had a setback so I stopped the caramels, but it took a long time to feel better, so I wasn’t sure it was the caramels. But recently I looked at the ingredients and saw…brown sugar. So I am avoiding those for now, too. It’s like a weird and horrible puzzle that you can’t figure out. Trigger foods can set you off the same day you eat it, or not for two weeks (as you build up less and less of a tolerance), so it’s near to impossible to figure them out.

Meanwhile, the setbacks I’ve been having the last year plus have been weeks-long episodes of oscillopsia. Oscillopsia is the sensation that the surrounding environment is constantly in motion when it is, in fact, stationary. Oscillopsia is usually a symptom of conditions that affect eye movement or the eye’s ability to stabilize images, especially during movement.

That shit is no joke. I can’t see when I move my head, and walking makes your head move. For me, the environment swings left to right in a wobbly fashion, and more recently also swings up and down in a wobbly fashion. And not one of the medications I have would touch it. Only this last relapse, where I stopped eating the marshmallows right away and took the migraine abortives three days in a row, did I get some relief after a few days. Normally I can be stuck with the oscillopsia for 10-21 days, 24/7.

Also, I don’t leave the house for anything. In the last six months, I’ve gone to my oncology appointment and gotten my mammogram. Hub goes grocery shopping every week, and runs any other errands needed. He’s been working from home every day since COVID, so neither of us is in contact with others for any length of time. Considering my health, Hub’s health, and my father’s health (who is part of our “bubble”), we are staying out of circulation as much as possible. Between COVID and my migraine disease, I haven’t eaten outside my house in over 3 years. And I haven’t eaten hardly anything that isn’t whole foods, or made ourselves at home from whole foods (with the exception of marshmallows, caramels, and popcorn…which are my snacks). We cook and bake a lot now.

It’s been really difficult, and an experience I wouldn’t wish on anyone (except maybe the asshole in the white house, but I won’t digress). Most people don’t really understand because they’ve never dealt with vertigo or the other visual issues. All of it is exhausting, physically and mentally. I’m still trying hard to find things to be grateful for every day, because I know that can make a difference. I’m also still seeing my therapist (telehealth) on a regular basis, which is helpful.

Another time we’ll talk about my father, my #2 brother (B2), my #3 brother, and various other bits and bytes.

 

Three years behind me

I had my bi-annual oncology appointment yesterday. As far as the doctor is concerned, he saw no problems. I have to set up my annual CT scan to confirm, which I will do in the next couple of weeks I hope.

Last night as I was getting ready for bed…brushing my teeth, I started crying. I miss my mother. This kind of news is something I would have shared with her on the phone from the car right after the appointment. Also, it is a milestone she never got to reach…three years post diagnosis. She died almost two years to the day she was diagnosed.

It’s like I keep finding new reasons to grieve all over again.